Part 19 of Our Award-Winning Series “Our Children’s Health”
By Liza N. Burby
Five times a day my 14-year-old daughter injects her arms, legs or belly with insulin; five times a day she sticks a needle in her arm to test her blood sugar levels. In both cases, she should probably be doing it more often.
Some mornings Laura’s blood sugar reading is so low I have to struggle to rouse her. At those times she looks at me without recognition. Other days her sugar levels are so elevated she feels ill and needs an extra insulin injection and glasses of water to restore her system to a more balanced state.
Wherever she goes—school, sleepovers, cheerleading competitions—Laura always has to worry about the delicate juggling act between maintaining her blood sugar and insulin levels and what she eats and how much energy she exerts. If she doesn’t, it could prove fatal.
This reality has been a part of Laura’s life since May 25, 2001. (All parents can tell you the date their child’s lives—and therefore their own—changed.) Unless researchers come up with a promised cure, this is likely to be her daily pattern for the rest of her life.
Laura has type 1 diabetes, also known as juvenile diabetes or insulin-dependent diabetes mellitus.
Alexa Yim, 21, a senior at Bryn Mawr College, says the “what ifs” are the only things that keep her motivated to take two blood pressure medications, one insulin shot and an oral medication, Avandia, daily. Though she’d like to be like her college peers, she has to watch her diet vigilantly and can’t drink alcohol at parties like her friends can. She has more sobering concerns than gaining a few pounds or getting a hangover. Yim worries about complications like blindness and amputation.
“I’m a violinist, so the thought of losing an arm keeps me in check, even when I’d rather not deal with the disease,” says the Woodside resident who plans a career in public health. Already she is coping with kidney and liver damage.
Yim doesn’t remember the day, but she does recall she had just completed a freshman biology session on endocrinology and realized she had been experiencing increased thirst and urination, as well as lethargy. She asked her mother to have her tested for diabetes, never expecting it would really be an issue. But her blood sugar level was over 500. That’s about 375 too high.
At age 14, Yim was diagnosed with type 2 diabetes, also known as adult-onset diabetes or noninsulin-dependent diabetes mellitus. It has become increasingly common for children to be receiving this adult diagnosis
Both girls are facing a lifetime of medical concerns, from heart disease to nerve damage. Both girls require daily medications or they have immediate discomfort, like lethargy, light-headedness and nausea. Yet both girls ultimately have very different diseases. But to hear the increased media coverage, which focuses only on the pairing of the words “diabetes” and “childhood obesity,” you would think there’s one universal disease afflicting children. And that somehow they all brought it on themselves.
There are actually many forms of diabetes, including gestational diabetes, a risk factor of pregnancy; pre-diabetes, when a person’s blood glucose levels are higher than normal but not high enough for a diagnosis of diabetes; and even a type 1.5, also known as Latent Autoimmune Diabetes of Adults, a medically complicated cross between type 1 and type 2 diabetes that impacts adults.
Until about 10 years ago, it was generally thought that the only type of diabetes children and adolescents could get was type 1. But as you’ve no doubt heard, children as young as 7 are being diagnosed with type 2 in what the medical community calls an epidemic.
“A decade ago it was an almost negligible occurrence that a child would have type 2,” says Dennis Carey, M.D., section head of diabetes at Schneider Children’s Hospital in New Hyde Park. “But now because of the so-called obesity epidemic, children dress up in adult diseases by getting all the medical complications adults do, like increased cholesterol—and type 2 diabetes.”
And it should be pointed out that adults can get juvenile diabetes, just as children now get adult-onset diabetes.
No matter what name it’s known by, about 240,000 Long Islanders have diabetes and about 500,000 are pre-diabetic, according to Toni Riedel-Lehmann, associate director for the Long Island chapter of the American Diabetes Association (ADA) in Melville. Of those who have been diagnosed, 5 to 10 percent have type 1, and 90 to 95 percent have type 2. And while Riedel-Lehmann says that there is not currently specific data on how many of those are children, the nature of the diseases indicates the numbers are high.
What most people don’t understand is if both types of diabetes affect children, how different can they be?
According to Thomas A. Wilson, M.D., professor of clinical pediatrics at Stony Brook University Medical Center, they are two diseases that have similar names, but very different reasons for what causes them.
“The confusion comes from the name, and in both cases it comes from the term diabetes mellitus,” he says. “Mellitus means sugar and diabetes actually means excess urine output.”
In simplest terms, type 1 is insulin deficiency and type 2 is insulin resistance. Dr. Wilson says that with type 1 diabetes, the pancreas no longer makes insulin, a hormone that allows us to get energy from food, because the body’s immune system has attacked and destroyed the pancreatic cells specialized to make insulin. The body needs insulin to let sugar (glucose) move from the blood into the body’s cells, where it can be used for energy or stored for later use.
Without insulin, a child’s body will store sugar in their bloodstream, which over time can damage the vessels that supply blood to the body’s organs, like the heart and kidneys, and can cause serious health problems.
Type 1 diabetics have to take their insulin through injections or an insulin pump (a portable device that delivers a steady flow of insulin into their body through a catheter), and it’s not an exact science how much insulin children in particular, with their unpredictable activity levels and hormone fluctuations, will require at all times of the day.
It is believed that six million mostly asymptomatic Americans have diabetes type 2 and do not know it. Type 2 diabetes usually begins with insulin resistance, a condition in which muscle, liver and fat cells don’t use insulin properly, says Dr. Wilson. As a result, the body needs more insulin to help glucose enter the cells to be used for energy. The more fatty tissue a child has, the more resistant the cells become to insulin. At first, the pancreas keeps up with the added demand by producing more insulin. In time, however, the pancreas loses its ability to secrete enough insulin in response to meals.
Dr. Carey, who is also associate professor of pediatrics at Albert Einstein College of Medicine in the Bronx, says that type 2 diabetes can be treated first by weight loss and careful diet and exercise. In many cases, oral medications like Metformin and Avandia help the internal insulin work better. For some, as with Yim, the medication can affect the liver, but Dr. Wilson says most patients tolerate the medications well.
Riedel-Lehmann says that within 7 to 10 years of diagnosis, someone with type 2 will become insulin dependent.
“Once you’re diagnosed, there’s no cure at all, all you can do is manage it,” she says. “People think their blood sugar levels are great and they don’t have it anymore, but you always have it. You can’t become complacent.”
Symptoms and Diagnoses
According to the ADA guidelines, a fasting blood sugar level should be consistently under 100, and two hours after a meal, it should be under 200. A range of 100 to 126 is considered to be an impaired fasting glucose or a pre-diabetic state. Higher than 126 is diabetes.
Increased blood sugars will lead to the same symptoms for both types of diabetes: excessive thirst, frequent hunger, excessive urination, rapid, hard breathing, sudden vision changes, weakness, drowsiness or exhaustion, and sometimes a fruity odor of the breath. Type 1 diabetics can also experience a sudden weight loss, which can lead to a condition called ketoacidosis and eventually a diabetic coma.
“We see more children under five in the emergency room because parents aren’t thinking of diabetes in someone so young, and often can’t tell if they’re changing diapers more often, for instance,” says Dr. Carey. “It’s a bit easier for the older child to be able to report that he’s going to the bathroom more often or is feeling thirsty.”
The seemingly sudden onset of symptoms is common for type 1 diabetics. Shannon Jones of Port Jefferson says her daughter Kierstyn was diagnosed on Aug. 4, 2007, a month before her tenth birthday while the family was on vacation.
“She went downstairs for breakfast and a while later called up to us that she needed help. She had passed out in the bathroom, and when she came to, had crawled into the kitchen,” Jones says. “We rushed her to a local doctor who said her blood sugar was over 300. Then she passed out again in front of us. I didn’t know anything about diabetes as we sat with her in the hospital those first days. And there seemed to be no warning.”
A Better Disease?
In contrast, says Dr. Carey, kids with type 2 can go along seemingly unaffected for years. “We know pre-diabetics can have blood sugar readings of 190 for years and not be symptomatic. But the damage of that 190 is harming your blood vessels all that time.”
Is it better to have one type than the other? Dr. Carey says it would be a mistake to say type 2 is easier since a child could have had it for a while and could have complications as a result.
“Type 1 has a life-threatening component, but we’ve seen more deaths with people who didn’t know they had type 2 because they really ignored their symptoms for a while. The most likely time to die is before diagnosis,” he says. “Kids are constantly rescued from dying with diabetes. The symptoms are the same, but they come on more suddenly with type 1, and with type 2 you can get lured into complacency. People should recognize that excess urination in children and adults is diabetes until proven otherwise.”
Carey says that like type 2, type 1 is also on the rise worldwide. “We’re not sure why, but one theory is an environmental factor for type 1, which is an autoimmune disease. All diabetes is genetic to some extent. Type 2 is polygenetic; there are many different factors why someone will develop type 2. Type 1 is genetic, but only 1 in 20 type 1 diabetics have a first-degree relative (parent or sibling) who also has type 1, whereas with type 2, almost everyone has someone in the family with it.”
In other words, researchers aren’t yet clear what causes type 1, but they believe there might be environmental factors, when combined with a genetic predisposition, that can set off a chain reaction that leads to diabetes.
When it comes to type 2 diabetes, however, doctors are fairly clear that people with the disease in their families are at greater risk for developing diabetes themselves. Other risk factors include being overweight, being inactive and belonging to certain ethnic groups. While some research indicates that type 1 is more likely to affect Caucasians, groups such as African-Americans, Latinos, Native Americans and Asian Americans are at higher risk for type 2.
Yim, whose parents are from South Korea, says at 5-foot, 6.5-inches, her Body Mass Index as a teen put her in the overweight category. In addition, both her paternal and maternal grandmothers had type 2. “I had all the risk factors, but my parents and two younger siblings have not developed diabetes, so I’m not sure why me,” she says.
Both Dr. Carey and Dr. Wilson say that treating children with type 2 diabetes is a challenge because it can be difficult to get the families on board to make major lifestyle changes. Further, there’s a stigma and denial associated with having type 2 due to the obesity link. In fact, several parents of type 2 children were resistant to be interviewed for this article because of the stigma attached to their child’s disorder.
“Type 2 diabetes is the most difficult nut to crack especially when we’re addressing prevention,” says Susan Wilk, coordinator of The Diabetes Resource Coalition of Long Island at the Cornell Cooperative Extension of Suffolk in Riverhead. “If you think of it as ‘it runs in families,’ where you can visualize generation to generation passing down and holding on to old habits like overeating, not knowing how to prepare healthier meals, eating too much junk foods and fast foods, and at the same time being less active, we have a disease of the environment. On a very basic level everyone needs to understand that type 1 cannot be prevented, but type 2 can be delayed or prevented.”
The End Result
No matter what the cause or which disease, the end result is usually the same. Over time, all diabetics can develop neuropathy (nerve damage), retinopathy (damage to the eyes), nephropathy (kidney disease), heart disease, skin problems, foot complications and dental issues.
But all this scientific and medical data occurs alongside the emotional aspects and the day-to-day complications that children and families face. “And it doesn’t help that though we are bombarded with news about childhood obesity and prevention of type 2 diabetes, people are still misinformed,” says Wilk. “And someone should understand that the children are listening. For instance when you talk about preventing diabetes, what a type 1 child hears is that there was something they did wrong and that they could have prevented it, which isn’t true.”
“People just don’t know any better,” says Barbara Rogus, executive director of the Long Island Chapter of the Juvenile Diabetes Research Foundation in Melville, whose organization focuses on research for type 1 diabetes. “We get anonymous letters in response to our newsletter from people telling us that if our kids would just stop drinking soda, their diabetes would go away, which has nothing to do with type 1.”
Riedel-Lehmann says that at a recent ADA meeting, “a woman turned to me and said, ‘diabetes doesn’t kill.’ She had no idea, but her perception was that it’s just diabetes, but there are deadly consequences.”
Tom Karlya, vice president of the Diabetes Research Institute Foundation, who has an office in Medford, has been a nationally recognized advocate for causes related to juvenile diabetes since his daughter Kaitlyn’s diagnosis at age two—on Sept. 26, 1992.
“When she was in the emergency room she had IVs in both her arms, and she said, ‘Daddy, fix.’ I promised her then I would leave no stone unturned,” says Karlya. “We have to do a better job in the diabetes community of educating parents. In the early days, all parents worry what it was they did to cause their child to have it. We hear nightmare stories from across the country about how schools and communities deal with it. They don’t know how to handle it.”
Children with diabetes can face discrimination at school or day care. There have been cases of children who weren’t allowed to go on field trips unless a parent chaperoned; who were cut from a sport because the coach thought people with diabetes couldn’t be good athletes; who weren’t allowed to check their blood glucose levels in class or to eat necessary snacks; and who weren’t allowed to participate in after-school activities because no one knew how to care for diabetes.
In one of the most recent public cases of discrimination, in 2004 in Palm Beach County, Fla., 14-year-old Nikki Wagner had her insulin pump ripped from her stomach by her principal who refused to believe the girl wasn’t wearing a beeper. In addition to the trauma, the girl developed an infection in her catheter site. Her parents then sued the school district and won.
Closer to home, last summer, a complaint was filed through the Americans with Disabilities Act against the Raynor Country Day School in Speonk. Parents say the school initially refused admission to summer camp for their diabetic children. The case was settled in the U.S. Department of Justice and the school has since published an agreement on diabetes management.
Yet there is no place that a lack of information about childhood diabetes can cause more harm than in a school setting, where children spend several hours of their day, and parents have to trust that the school system is equipped to monitor their child’s health.
“In school systems, whose responsibility is the child?” says Karlya. “Should children be allowed to test [their blood level] in their classrooms or do they have to walk all the way to the nurse’s office when their blood sugar may be low? Things that seem to make sense are not always handled well, and there’s only a sporadic response from Long Island schools.”
Programs like the ones Wilk offers can educate school personnel and students about diabetes. Parents should develop a Diabetes Health Care Plan with their child’s doctor and school. Diabetic children should have a Section 504 plan or an Individualized Education Plan (IEP) that can establish accommodations, like being able to test their blood sugar in the classroom and making sure the school has someone trained on site to handle an emergency. In most cases problems can be resolved by communicating with school personnel.
Meanwhile, parents of type 1 diabetics hope for a cure. Norma Sue Kenyon, Ph.D., co-director of the Executive Research Council of the Diabetes Research Institute at the University of Miami in Hollywood, Fla., has a 16-year-old daughter, Laura, who was diagnosed Aug. 25, 1993. Dr. Kenyon is also a researcher who has been working on clinical trials to help the pancreas regenerate insulin-producing cells in the newly diagnosed. There have also been efforts toward research of transplanting islet cells from a healthy pancreas.
“But the drugs used to prevent the body from rejecting the organ causes side effects, because they suppress the immune system in a global way, so patients are more at risk for cancer and infection,” Kenyon says. “Further, there aren’t enough donor organs and you need at least two for this islet transplantation because you lose half at transplant.”
Kenyon says that researchers are confident that they’ll be able to find a cure someday. But for now, the tools to help manage diabetes are better than they used to be, with shorter, less painful insulin needles and glucose meters that don’t require children to prick their fingertips to get blood samples. And Dr. Carey says researchers are working on a “smart pump” which can both read a child’s blood sugar and automatically deliver the right amount of insulin, essentially a battery-operated pancreas.
In the end, sometimes it comes down to the psycho-social acceptance that is the challenge for parents and children, says Carey, adding, “everyone needs emotional support.”
Says Dr. Kenyon: “On a personal level, to me the hardest part is the psychological part. When your child is diagnosed, no one tells you about the impact on the family, but it affects your other children. The science part I deal with every day. But the part where you wonder all the time, why her? Why my child? At times you’re so overwhelmed. If someone had told me that when she was in a diabetic coma and all we could think about was getting her well enough to come home, maybe I would have been prepared. And then you have to deal with all the misinterpretations of people telling you, ‘Don’t worry she’ll grow out of it.’ No one understands what they can’t see, because you can’t look at a child and know they have diabetes. But they have to be aware of their disease all the time.”
College senior Yim agrees: “I always have to watch out for what most people don’t give a second thought to. I’m not sure people would understand even if you explained it to them. Dealing with a chronic disorder means you have to deal with this for the rest of your life, and in so many unexpected ways. Since I was in seventh grade I wanted to join the Peace Corps. But I learned they won’t take me because if you have complications from diabetes, you aren’t allowed to join. That reason seems so unfair. At the same time, it’s one of the reasons I want to go into public health and maybe medical school after that.”
Dr. Wilson says that the public has to accept the fact that type 2 is preventable. “If we can just readjust our lives this epidemic of type 2 would go away. But because of the treatments we have, all diabetics can do very well, and can live long, healthy lives without complications. Childhood diabetes is a serious condition, but it is manageable.”
Liza Burby is the former editor of Parents & Children magazine and the current publisher/editor of Long Island Parent.
Diabetes Resource Coalition of Long Island in Riverhead
631-727-7850, Ext. 385
Juvenile Diabetes Group
Sid Jacobsen JCC
516-484-1545 ext. 148
Long Island Chapter of the Juvenile Diabetes Research Foundation in Melville
Long Island Chapter of the American Diabetes Association in Melville
Pediatric Diabetes Education Center, Schneider Children’s Hospital in New Hyde Park
Stony Brook University Medical Center Department of Pediatrics
The Good Samaritan Hospital Children’s Diabetes Support Group in West Islip
Winthrop-University Hospital in Mineola
(for assistance with 504s and IEPs)
Doreen Cordova/Cordova & Associates